A Physical Disorder Unknown

Medical Dictionary - Merriam-Webster

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CFS – CFIDS – ME
Terminology

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I have recently identified CFS as Autoimmune Polyendocrine Syndrome Type 2.

However, in the medical world CFS is not yet considered a specific disease but is still considered merely a cluster of symptoms caused by neuroendocrineautoimmune dysfunction, or chronic progressive autoimmune tissue damage affecting the endocrine system, muscles, organs, and brain.

No specific treatment for CFS, as of yet, has been developed, due to long-term medical denial that the disorder is physical. This led for many years to a dearth or misdirection of medical research, and misconceived research into treatments for CFS which are actually treatments for unrelated diseases such as depression.

The correlation between having CFS and having had toxic exposure and/or an infection such as mononucleosis, Epstein Barr, or the herpes virus has been shown; however, no specific toxin, microbe, virus, or bacteria has yet been linked to CFS definitively.

It is possible that any toxic environmental or pathogenic exposure may cause an autoimmune reaction in the body that develops, over time, into CFS.

Even the chronic stress of child abuse, trauma which damages the brain and the body as much as any environmental toxin or disease process, may be etiologic for CFS.

However, what I suspect the most is chronic oxygen depletion. That is a formative theory which I haven’t developed yet.

Any additional sudden or overwhelming stress may lead to the final physical breakdown and permanent disability of CFS. The poor body finally goes blewy. The resulting autoimmune endocrine and neurological symptomology is called at this time, erroneously, Chronic Fatigue Syndrome (CFS), Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), or Myalgic Encephalomyelitis (ME).

(The fatigue, cognitive problems, muscle pain, new allergies and sensitivities are part and parcel of severe autoimmune breakdown in the body; even children can have it).

The disorder, first noticed in Lake Tahoe, California in the early 1980s, was called “Chronic Fatigue Syndrome”, denigratingly, by the CDC researchers who first investigated it.

You may have heard of it as “chronic fatigue”, as in someone telling you, “I have Chronic Fatigue”.

A few years later, patients coined the term “Chronic Fatigue and Immune Dysfunction Syndrome”, or CFIDS, for the disorder, a terminology which is far more descriptive.

Fibromyalgia is widely thought to be the same disorder; patients who have fibromyalgia have more muscle pain than the average CFSer, as the symptomology in CFS can vary in intensity and persistence.

I live in the U.S. and I learned in the mid-1980s that I had CFS, so that is what I usually call it. It is usually called ME in the UK. The term CFIDS is still around, as well.

The terms CFS and ME are now used interchangeably, or shortened to CFS/ME or ME/CFS.

Some patients won’t use the term CFS and insist on ME alone; I don’t care.

When the terms are combined, some patients find the placement of the acronym “CFS” before or after the acronym “ME” significant; I do not.

I believe that until a standardized terminology is adopted the name doesn’t matter, as long as people know what one is talking about when one talks about it.

I don’t even call it CFS any more, because I don’t believe that this so-called disease is anything more or less than an unrecognized Autoimmune Polyglandular Syndrome.

There is anger over the terminology for the disorder, however, among some of the patient/patient advocate community. A truly accurate medical terminology is something that all CFS/CFIDS/ME patients are waiting for.

The issues at stake are that:

  • Calling a disease by one of its symptoms, chronic fatigue, confuses the symptom with the disease.
  • Chronic fatigue is not the only symptom of CFS, nor is the term “chronic fatigue” evocative of CFS’s impact on people who have the disease. As author and CFS sufferer Laura Hillenbrand put it, “‘Fatigue’ is to CFS as a match is to an atom bomb”.
  • Chronic fatigue is also a symptom in other diseases. (Though the degree of fatigue with the other diseases may not be comparable to the bone-melting fatigue of CFS.)
  • I have read complaint that the use of the word “syndrome” in Chronic Fatigue Syndrome may be misleading, as “syndrome” may more often be applied to mental disorders than to physical disorders. This is not a hard and fast rule, however; diseases of unknown etiology are often called “syndromes”.

When doctors came up with CFS as the term for the disorder they either assumed that it was (or wanted it to be thought of as) a psychiatric or psychosocial disorder. That outlook has persisted in the medical community, leading to the patients being disparaged and the disease being ignored. Medical denial of the reality of CFS as a biophysical disorder, however, is shamefully anti-scientific.

The patient community and sophisticated doctors and researchers are moving toward obsoleting the term “Chronic Fatigue Syndrome” and using the term “Myalgic Encephalomyelitis” alone, as this term has a longer medical history and is more descriptive of the disorder than CFS. They are also looking for another, better name for the disorder. I agree with this move.

I have used the term “CFS” the most often when I have spoken of it, and written of it in this blog, as it was the first term that I learned, and it still remains the most widely-used term for the disorder in the United States.

But what the disease or disorder is called doesn’t really matter. What is needed is a cure.

- Cathi Carol, 2012

 
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Last Updated: March 30, 2013
 
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